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Friday, August 27, 2010

*UPDATE: For those here from Facebook, this is an old update from the first time we lost Raffi. He was found after this, but he has lost him again and this time has not been found. He has a replacement (the one from the picture in this update), this story is the reason we bought the replacement years ago. It is just still not the same, as he never loved it like the original. Thank you for helping by sharing posts and caring about this story!

Those of you who have followed this blog for a while know about Raffi, Andrew's nighttime blankie giraffe that he sleeps with every night. Raffi has been on many adventures with our family, and I figured his latest one is worth documenting. It seemed fitting for Raffi to have a post dedicated only to himself, since he has basically been a member of the family since day one.

Raffi goes everywhere Andrew goes...to day care, to grandma's house, on family vacations...you name it. It has always been a concern of ours, that if we were to ever lose Raffi, Andrew would never sleep again! Ha! There have only been a handful of nights in his whole life that Raffi hasn't had his special place next to Andrew in bed.

One day I came in when he was napping in his crib and found Raffi on his head! I just laughed and laughed.

Raffi has been left in hotel rooms, and misplaced many times. Many nights we have scrambled, searching the house for Raffi at bedtime when we are determined the bedtime routine has to go smoothly.

It just doesn't go smoothly without Raffi.

When he was a baby he would purposely throw Raffi on the floor and then cry for him. His sneaky little way to get mommy back in his room at nap time! Ha!
Raffi has followed Andrew from his crib, to toddler bed, to big boy bed.

This was his first night in his toddler bed, Raffi in a tight grip.

One of many nights spent at Ga Ga's house. One night we sent him to my mom's overnight and forgot to send Raffi. My mom could not get him to sleep for anything. We don't make that mistake anymore!

We have said many times, while on the search for Raffi, that he needs to stay in Andrew's bed, so we never lose him! But he always ends up somewhere else. Andrew carries him out of bed in the mornings and brings him to cuddle, wherever that may be.

Many times we find him twisted around the sheets in our bed after Andrew has snuck into our bed in the middle of the night been in our room (for something other than sleeping, because we certainly wouldn't let him sleep in bed with us. That would just create a hard habit to break. Ahem.)

Raffi has joined us on many car trips...

And he has accompanied us on countless trips to the hospital for Andrew's surgeries and procedures...

And has gone to "school" with him almost every day.

This is one of my favorite pictures of him heading to school during his first week last year.

Sometimes Andrew has fun being silly with Raffi...

They are just best buds!

I have tried multiple times to wash Raffi (because you can imagine how dirty he gets!). You might notice from the first picture how nice and clean he was. He's starting to look pretty beat up. Andrew gets kinda mad when it is Raffi's "bath time" and we watch him through the window of the washing machine. He's all matted and just not fixable anymore.

Andrew could care less.

So, I have looked everywhere for a replacement Raffi. You know, just in case. We've had too many close calls. It is an old Carters brand and they don't make the exact same one anymore. They have one similar, but Andrew knows it's not the real Raffi and calls it "Baby Raffi."

Then we found him a Mickey Mouse blankie, thinking we could take it to Florida instead of risking losing Raffi in another state.

He just calls it "Mickey Raffi"and plays with it from time to time. He definitely knows the difference.

The bottom line is, there is just no replacement for the real Raffi.

Andrew was having none of it.

Raffi went to Florida.

And that is where his latest adventure begins...

He almost didn't make it back. Or at least we thought.

Somewhere between checking out of our Disney hotel on day 3 and checking in to my friend's house, Raffi was misplaced. Again.

In the three days Raffi went missing, we went searching. I called the hotel multiple times and looked through all our luggage. So we looked online and much to our surprise (because we had looked plenty of times before), there was the exact.same.Raffi. On Ebay. And it only cost $9 bucks. Totally worth it. Look how squeaky clean it is! I'd have it shipped to our house and tell Andrew they found him at the hotel and sent him in the mail. And gave him a bath.

Well, shortly after I ordered it, the real Raffi was found and made it home with us. Somehow in the mad dash to get checked out of the hotel I must have stuffed him in a side pocket of my suitcase.

A few days after we got home, replacement Raffi arrived.

I was determined not to let Andrew see them both together. You know, because then he'd know there were two of them. And then my plan wouldn't work.

My plan was brilliant.

Keep replacement Raffi somewhere hidden, so if we ever lost Raffi or forgot him somewhere, we'd have back up.

I swear this kid cannot be fooled. He saw replacement Raffi in the laundry basket after I washed it, picked it up and hugged it. I thought, oh boy, this is it. Will he notice? Right away he gave it a name...

Sunday, August 22, 2010

My wonderful friend, Stef is having an incredible blog event today! A chance for heart families to connect and read each others stories, to offer support and ask questions about this world we have all come to know called congential heart defects. I am so excited to be a part of it! You can click the button above to go to Stef's page and read lots of other heart stories!

Many of you may be new to my blog today, and others have known us through our entire heart journey. Mostly I use my blog to post the fun adventures we have with our little monkey Andrew, now almost five years old. We have been fortunate lately to have had a break medically, so we have taken full advantage of it! I really believe in doing as much as possible as a family so we can all make wonderful memories together. Andrew is going to be having a third open heart surgery within a year, and we are currently living month to month as he is being closely monitored by his cardiologist.

**Update: Andrew's third surgery took place last March, 2011. The surgery widened the pulmonary arteries, but they have not stayed open so he had another heart catheterization last September and stents were placed in the left PA again and widened. His branch PA's are very small, and during that cath we were given the news that there isn't much more they can do besides more caths, and continuing to widen the stent. That may or not cause the branch PA's to grow. We are looking at trying oxygen therapy if they aren't showing growth on their own. So for now, we are hoping and praying they will grow. You can read more about this here.

So, let me start from the beginning.

Literally. The getting pregnant part. For us it didn't come easy. My husband, Craig, and I tried to have a baby for almost 2 years. Our struggle with infertility was very trying and challenging for us. Where many couples would let this distance them, instead my husband and I became closer to each other and to God as we prayed together for God to bless us with a child. In God’s perfect timing, we were told that In-Vitro Fertilization was our only option. We wanted a baby so badly. We knew we had to try. We were ecstatic when we discovered we were pregnant. I had never felt such joy in my entire life. We knew that our baby was a true miracle, and became excited planning and preparing for the arrival.

Pretty much since that day, the roller coaster ride began. We went in to hear baby's heartbeat at 6 wks and heard nothing. We went from sheer joy to utter devastation. But we refused to give up and went back a week later, this time to see a tiny flash on the screen. All I can remember saying is, "isn't that a heartbeat?!" and bursting into tears. Indeed it was, and baby was to be born on daddy's birthday. What a miracle.

The roller coaster continued with our 20 week ultrasound. Never in a million years could I have predicted what would happen. The technician seemed concerned, and the ultrasound took a really long time. My heart sank, because I just knew something was very wrong. She finally went to go get our doctor, which concerned us a great deal. The doctor took a look and concluded that there was “possibly” a problem with our baby’s heart. She sent us on to the perinatologist. We were so scared and devastated. That was the moment our lives changed forever. It is a feeling you cannot describe, and only other heart families truly understand. We had already been through so much with trying to conceive, thinking that would be our main obstacle with this pregnancy. The truth was, that God wanted to teach us so much more.

This has always been a favorite picture of mine. We were all standing in the NICU, he was only a couple days old and he stretched and folded his little bruised hands just like this. Everyone in the room had chills. It was a perfectly orchestrated moment.

At this appointment doctors practically forced us into an amniocentesis, where we would learn if our baby had any other chromosomal issues. We were given the option of terminating the pregnancy, which makes me sick to think about. We knew that if God meant for this baby to be here, then that was His will and not our choice. Thank God, two weeks later we got the results of the amnio and they were great- all chromosomes accounted for. That day we celebrated.

The rest of my pregnancy went well until a routine doctor’s appointment on January 29th when I was just 34 weeks pregnant. An ultrasound showed that the baby had not grown since our last appointment a month ago, and my fluid was low. This meant that he only weighed that of a 30 week gestation, and I was certain that he couldn’t live if he was born that tiny. I was put on immediate bed rest but sent first to do a non stress test. The NST showed I was having minor contractions, which I didn’t feel. But they sent me to the hospital, just in case. I remember laying in the bed hooked up to the monitors, waiting for someone to come and tell me when I could go home. Lunch came and went. I didn’t order from the menu because I was surely not staying there that long! The same thing happened with dinner. I refused to believe that I would be remaining in the hospital and very possibly delivering our baby that evening.

The one thing I do remember from that evening after we had talked to the doctors and our visitors had gone home…when things finally settled down, God’s presence had never been more near to me. I had been told by my doctor that if baby’s heartrate dropped too many more times as I was contracting, that they would have to deliver him. I layed in that bed and stared at the monitor, just watching his little heart rate for hours and talking to God. Praying for HIS will to be done. If that meant our baby was to be born that night, then that is what I prayed. I prayed that he would survive outside my womb, being born so early. I prayed for peace, because I was terrified. I needed some sort of comfort, and God gave that to me during that dark time. I felt a wave of peace come over me that I had really never felt before. I KNEW God was there with me, along with my dad, my guardian angel. It was a very special moment and right then I knew that whatever path was chosen for our baby, that everything would be okay.

Before we knew it, about 1:00am the nurse came in and began to hustle around the room. I knew it was time. The baby’s heart rate was dropping with each contraction I had, and this concerned the doctors. They assured me that he would most likely live better in the world at 6 weeks premature than inside me. I was soon being wheeled to deliver our baby via c-section. The hospital was stark and silent at such an early morning hour- and suddenly a whole team of doctors and nurses just appeared as if from nowhere. They knew the team needed to be ready to whisk baby away to the NICU. This whole experience was another work of God… if we hadn’t had that doctor’s appointment that day our baby would not have survived. I was again terrified. How could my baby live with a heart condition and be 6 weeks early? I knew the situation was very serious, but was very grateful I was in good hands.

The most beautiful sound in the world came at 2:26am when we heard our son Andrew’s first cry. He was alive! I can remember watching them take him over to weigh him and seeing his tiny limbs and his full head of dark hair. I was instantly in love. My husband cut the umbilical cord, and was able to bring Andrew over to me for just seconds as I ran my finger over his precious head before they whisked him off to the NICU. I sent Craig to be with Andrew as I lay there feeling numb, unable to believe he was here and he was breathing on his own, and thinking of the long road ahead. We didn’t get to hold and cuddle our newborn baby as most couples do. My arms ached to hold him. To see him. We didn’t even have a camera that night, as it all happened so suddenly. Our first picture of him and the first time we held him was the next afternoon, when he was already one day old. He weighed only 3 lbs 13 oz.

For the next five weeks we lived in the NICU. It became our new home and the nurses and doctors, our family. I spent countless hours sitting by Andrew’s isolette, only able to touch him through holes in the sides. I stroked his tiny hands and feet. I sang to him, read to him and talked to him. I told him over and over again how much I loved him and how proud I was of him. Every moment was precious. Time was of the essence.

It was only 6 short days later when we learned what it was like to watch your child being wheeled down the hall for a major open heart surgery. As I kissed him that morning, I honestly didn’t know if I would ever see him again. I just wanted to take him and run away. He weighed just under 4 pounds and was the smallest baby to have this procedure done at this hospital. The tears flowed freely as I again collapsed into my husband’s arms, feeling incredibly helpless.

Hours after surgery (and that puppy is the size of a beanie baby, that's how tiny he was!)

Our days at home were so joyful, as we enjoyed every minute spent with Andrew, knowing his second surgery was near. It occurred at 7 months of age- he had the full repair of Tetralogy of Fallot.

(Notice the same puppy- that's how much he grew! And this was the first time he opened his eyes after his surgery.)

Since this time, three years ago, Andrew has only thrived.

I love this picture of him at 15 months, wearing his scar proudly! It reminds me of a time when these pictures were taken when he was 3 months old...

And I actually debated about having his scar digitally removed from this photograph, which proudly hung on our wall as a 16X20. I have to admit the first time I saw Andrew's scar right after surgery it almost knocked the wind out of me. I felt sick to my stomach. The nurses tried to prepare me, but there was nothing anyone could have said to make that sight any easier. Now, three and a half years later I can’t remember what my son’s chest ever looked like without that scar. It is just a part of him. At first it is hard to look at. Eventually it takes acceptance. Experience. It takes a few months to live with your child, to watch their personality develop, and to see before your eyes how that scar is a beautiful mark for the world to see. That it makes them who they are. You slowly but surely become proud of that scar. Proud of the pictures of their surgeries. Look what our children have been through! I believe that the more we share it with the world, maybe, just maybe, it will touch enough people that one day there will be prevention, or a cure for CHD’s.

Thank God we opted against removing it (with the urging of our photographer). I can’t imagine even thinking something like that now. Isn't it funny (and not in a laughing sort of way) how you change and your view of the world changes after you are thrown into this journey? Looking back at how much I've grown as a person and a mommy is just amazing to me. I will never be the same.

And I wouldn't want to be.

Today Andrew still has very small pulmonary arteries, as they didn't grow like they were supposed to after his last surgery (welcome to the world of congenital heart defects!) so he has had several cardiac caths to widen the PA's using stents. The stents are currently as large as they can get (after several times being ballooned). He has high pressure in his right ventricle, which will need to be corrected sometime within this year by removing the stents and widening his PA's surgically.

Of course we are dreading his upcoming surgery. Now, three years later, my baby is starting preschool and is a spunky three year old with an amazing little personality. The thought of putting him through this again makes me sick to my stomach. Especially now that he's older, and can understand more. I'd love some advice from parents of older children who have had surgery. How did you prepare them? Even more, how did you prepare yourselves? I just cannot imagine. Even though we've been through it before... as one heart mommy told me back then, "soon this will all be a distant memory." And she couldn't have been more right. You tend to forget those moments, the tough ones. Or at least you try to put them out of your mind.

There is so much more to our heart story, this was just a glimpse. But I hope you have gotten to know us better and will choose to continue to follow our journey. We would love the support as we approach Andrew's next surgery. I can't wait to meet some new heart mommy friends today! Thank you for visiting! Please enjoy a montage I created of from the beginning of our journey with CHD...

Thursday, August 19, 2010

So we didn't get enough traveling with our trip to Disney so we decided to hit one more place! Ha! This little engineer has always loved trains, and Papa had been wanting to take him on the Amtrak for quite some time now. So a couple weeks after we got back from one trip, we took a mini trip to the Omaha Zoo on the train!

It was so fun. Andrew was so excited for the train to come. He kept watching and waiting...

No, Andrew, we're not looking for an airplane! Ha! He looks a little confused!

We boarded at a little old fashioned train station, it was so neat.

The train was about 40 minutes late, so luckily we had things to occupy him! Once in a while another train would come blasting through and we watched it from the doorway, but it was really close and pretty cool!

Finally it was time to head out to the track and see the train come in! Andrew wanted to carry something like the rest of us so he took his DVD player! Ha!

I absolutely love this picture of him smiling at the train. He was beyond excited. I don't think he could actually believe we were going to get on and ride it! This was his first train ride ever.

It was so cute how he just walked right in and plopped down in a seat and watched out the window. Since the train was late, it got dark faster than we wanted it to, but dusk lasted for a little while so we got to see outside for about a half hour.

Enjoying the ride with Papa. We're so glad he suggested we do this! We all had so much fun! Thanks, Papa!

The fun thing about the train is that you can move around and bring anything you want on board (not like flying! Ha!) We brought a big cooler full of snacks and walked down to the snack car and sat at a little booth and ate snacks. Andrew loved walking between the train cars! I couldn't take a picture because it was way too wobbly! I had to hold on! Ha!

Then we checked out the observation car, where the seats all face the windows (you could still see outside a little bit, but it looks really dark here!)

Andrew started to get sleepy so laid down on Papa's knee!

After exploring the train (and the potty on the train, Lol!) we headed back to our seats and Andrew watched a movie. I seriously do not know what we ever did without this portable DVD player. We take it everywhere now! (I am embarrassed to admit we've even taken it out to eat with us a few times so we can get a meal in without being interrupted!! There's something you don't see every day! I know, mother and father of the year awards coming our way! Ha!)

Getting sleepy watching his movie...

He just didn't want to give it up! He was having so much fun. The other nice thing about the train...you can sprawl out and recline your seat and put your feet up! There is lots of room and it is pretty comfy.

So I debated about putting this picture in, but it has too funny of a story not to tell. You all feel like laughing, right? Well, do you see the lady behind us? Yeah, the one covering her eyes?? I seriously laugh out loud every single time I look at it. We kept snapping pictures, and it was pretty dark in there by this time. Mom was taking pictures of Craig and I, I took pics of her and Jim, we were all snapping pics of Andrew... Craig was trying to sleep and telling us how annoying it was! Ha! I never thought much about it until I saw this picture! That poor lady behind us... bless her heart! I wonder how many times the camera flashed in her face!! I sure hope she doesn't read my blog! Ha! I'm still laughing about that...Do you think it's a sign I take too many pictures? Even Craig laughed about it, and believe me he didn't think it was funny at the time! Ha!

We made it to the hotel I think around midnight. My mom and Jim had actually driven to Omaha earlier that day to drop off a car so we'd have one at the train station in Omaha. Yes, then they actually drove back to Des Moines so they could ride the train with us. They're cool like that. When they were there earlier they booked us a hotel room and I think the lady was confused when my mom told them they'd be coming into Omaha that night on the train! Ha!

In the morning we had a delicious continental breakfast and went for a quick dip in the pool before heading to the zoo.

Now, the Omaha Zoo is one of the neatest zoos in the country (I realize this is my opinion, but I really could argue it and almost win every time! Ha!) I have taken my second graders to the Omaha Zoo on a field trip for the past 9 years. Sure, our school is about 15 minutes from the Blank Park Zoo, but it just doesn't hold a candle to this one. So we make the extra 2 hour trip for a super fun field trip.

I know this zoo like the back of my hand. Or so I thought! They are always adding new things, and I have taken a couple years off and wow I was even more impressed with how much they have added!

We started with my favorite place- the Rainforest. It is a giant 2 story indoor rainforest with tons of unique animals. Andrew just loved all the waterfalls, bridges and hiding places.

There are trails where you can walk right by and see all the animals. It is so fun. Andrew was very into it.

I had to test out the beauty of my new camera with this shot. Ahhhh, I love that blurred background! It just makes me happy!

Of course we had to ride another train! A smaller one this time! Ha. Andrew loved it. It took us around the whole zoo. We decided not to get off and ride the whole way around.

Something new they added was the sky coaster. This was especially neat because we got to see animals that we didn't have a good view of on the ground, like the giraffes and the rhinos because they were hiding. But we saw them perfectly from up here. We even saw a baby giraffe. Adorable.

This is my other favorite part of the zoo. Watching the penguins swim. I could stay here for hours and watch them. Andrew could have, too! He loved it! They are so cute how they stand and waddle over to the edge and you know they are going to jump in. Then they glide so fast through the water and pop back out on the rocks!

We stayed and watched them for a long time. Andrew was just fascinated!

I love the aquarium. The sharks and stingrays swim right over your heads. It is pretty awesome.

After spending a lot of time in the nice and cool aquarium, we headed over to the funniest part of the zoo!

Gorilla Valley. I was trying to get a picture of Andrew with the gorillas because they matched his shirt, but he would not stand and look at me and smile. Would not take his eyes off the gorillas. He thought they were pretty cool.

He was very interested in these gorilla skeletons. I wonder if we have a future scientist here! He could not get over it!

I had to laugh at this picture because Andrew and the gorilla in the background are posing the same way! Ha!

This was so sweet. He loves the movie "Tarzan" and the part where the Mama gorilla and Tarzan put their hands together just like this. During that part he always comes up to me to have me put my hand up to his. It is so sweet. He did this right away when he saw this hand.

Wow, he's almost 3 ft tall!

Andrew acting like a monkey! What a silly boy. In the background you can see the baby gorilla on its mama's arm. It was too precious for words. We sat and watched it for a long time. Andrew could have watched it all day, even though it was sleeping! He always feels right at home around monkeys! Ha!

This was Andrew's souvenir from the trip. He's been acting like a tiger, walking around the house on all fours, hissing at me! Ha! I pretend like I'm scared of him and it just makes him giggle and do it more. He is so fun, I just love his age and how much more he is playing and interacting with us. He'll talk our ears off now and is hardly ever quiet!

We had a very fun mini vacation. Andrew has had a lot of "firsts" this summer, and we've enjoyed watching his excitement. I love making memories as a family.

And just because this is my new favorite picture of him... I had to post it again... he was wearing his conductor hat he got at the train station.

Andrew

Ten years old. Fourth grader. Karate-loving. Heart hero. Fighter. Courageous. Brave. Silly. Loving. Cuddly. Andrew was born six weeks early with a congenital heart defect called tetralogy of fallot and pulmonary stenosis. He has endured 3 open heart surgeries in his 6 years of life. He was also born with moderate hearing loss and wears hearing aids. He is an amazing little boy and the bravest kid I know.

Kerigan

Little Monkey's Mama

I am the proud mommy to my amazing 9 year old little monkey, Andrew, and beautiful four year old daughter, Kerigan. I love blogging about the adventures of our journey as a "heart" family. The ride may contain some bumps along the way, but we choose to focus on the day to day life of our little monkeys and celebrate the blessings that have been poured down upon us! Click the photo above to view my complete profile and read more about Andrew's special heart.